Lmst

#GdB bei #POTS #MECFS

RE: https://bsky.app/profile/did:plc:iafdntrd3la2vregiflpolfz/post/3lsnte4nmkc26

Keramikschale

www.tonagerie.at

#keramik #clayart #unikate #handmade #töpfern #steinzeugkeramik #pottery #pots #clay #art #ceramic #homedecor #stoneware #handmadepottery #potterystudio #handmadeceramics #wheelthrown #design #contemporaryceramics #interiordesign #tableware #craft

Zweifärbige länglich ovale Keramikschale. Rand grüngrau, Mitte schwarz-grau-Grün

Subject: sharing my novel ways of keeping cool in hot weather with ME/CFS, dysautonomia, POTS:

When I’m in warm environments my body doesn’t usually tell me when I’m too warm. It doesn’t start sweating or anything like that and I have no conscious awareness of it whatsoever. Instead, I start to feel deeply unwell and very quickly. This is very confusing. Due to being autistic as well, this can lead very quickly into overwhelm which results in the exhausting and humiliating experience of an autistic meltdown (an involuntary response to overwhelm that is physically exhausting to experience).

I only discovered all this by accident a few years ago (after experiencing it since I got ME/CFS 15-16 years ago!)

Now I know about it, and if I remember, I can take steps to deliberately cool myself down as quickly as possible. (And even prevent it in the first place!)

When I do this, it feels just like a miracle cure! I go from feeling so awful I am genuinely close to calling an ambulance, unsure when I’ll collapse… to perfectly fine again and wondering what all the fuss was about!

There are some barriers stopping me from cooling myself off, though. These are:

- Genuinely having no clue I’m too hot because symptoms are totally different to “normal” feelings of being too hot.

- Dependence on my memory to link what I’m experiencing with needing to cool down (hello to my ADHD and brain fog in ME/CFS too!)

- When this happens, I usually feel like I’m currently at a good temperature. I often say at the time that I feel like I’m already at the “perfect temperature”, “just right”, etc. Plus, I hate the sensation of cool air on my skin (feels like glass shards to me) so my instinct here is to fight against my knowledge that I need to cool off. But, instead, I need to bring awareness to all this to fight my instincts.

However! I have found something that is a good in-between and works more quickly than taking clothing layers off or finding a cooling fan, etc.

I have discovered that it is my head that needs to cool down most of all.

So, now, I will get some cool water and wet a cloth, holding it against my face. Then I’ll wet the top of my hair a little (so it can cool me like sweat does). Only then I’ll start to use the cool, damp cloth on areas where blood vessels are closer to the skin, but I will do this gradually so I don’t shock myself and I keep returning to cool my forehead, face, etc: neck, upper chest, inner wrists, inner arms, inner ankles, inner lower legs.

And most recently, I decided to explore head cooling caps to help with this even more.

I found this (pictured) cooling gel cap that’s made for people who get migraines or headaches. You can get various designs, but this one can reach down over my eyes, over my ears, or I can wear it higher, like a head band. Plus I can pull my hair out the hole at the top if I need.

This cap has a cooling sensation even without putting it in the fridge or freezer. But I will have it ready in the fridge during the coming few days of heatwave here where I am in the UK. I’m hoping this will help prevent those crushing feelings of not being able to cope and things escalating to an autistic meltdown. (Also have various other conventional cooling methods like fans, etc, but they take longer to work.)

Edited to add price: can buy gel head caps for £5 - £20 in the UK.

#mecfs @mecfs #pwME #pots @actuallyautistic #ActuallyAutistic

Image features a head cap product for relief and comfort, branded "myhalos" - many other brands of these exist. It highlights four key benefits: increased head coverage, more gel for longer cooling, increased light blocking, and a comfortable nose section. The cap looks like a smooth beanie hat, but much longer and with a curved edge that goes over the nose. It is hard to see in the photo but it has a hole in the top (by design). Some do not have this hole and instead have gel all round the head.

From @meresearchuk

The UK weather has been hot, and those with conditions exacerbated by heat are likely struggling. One such example is orthostatic intolerance, common in ME/CFS, where the body fails to compensate for an upright position.

Read more: https://bit.ly/4kSdpqZ

#MEcfs #POTS @mecfs @pots

$HEAT, ME/CFS AND ORTHOSTATIC INTOLERANCE In many people with ME/CFS, the body does not compensate adequately for a change to upright posture, leading to a reduction in blood flow to the brain and symptoms of orthostatic intolerance. There are many exacerbating factors, one being heat e.g. during hot weather or even a hot shower. SUNNY DAY HIGH TEMPS - I DIZZINESS WEAKNESS LIGHTHEADEDNESS 1' HEART RATE % \ BREATHLESSNESS DIFFICULTY THINKING ... A review about orthostatic intolerance in response to heat states that underlying mechanisms are "multifactorial" and "involving interactions between multiple physiological systems". Potential causal factors include changes in blood vessel resistance, blood distribution and the modulation of cardiac output (amount of blood pumped by heart per minute). Schlader, Z.J., Wilson, T.E. and Crandall, C.G. (2016). Mechanisms of orthostatic intolerance during heat stress. Autonomic Neuroscience. SCO36942$

Today’s experience of worsening POTS symptoms has made me conclude I am a mermaid. 🧜🧜‍♀️

(😁 Stay with me here…)

This is because, right now, I am doing so much better whenever I sit with my legs curled beside me on the same level.

AKA: My legs are about as useful to me right now as a fish tail out of water.

🐠

This analogy is on honour of @EdibleFuchsia who thinks I might have a knack for them but I’m not so sure… have so take it too far yet?!
#POTS #pwME #mecfs @mecfs

Praktische mittelgroßen Vase und Lichtreflexionen gibt es auf den glasierten Keramikoberflächen jede Menge

#FotoVorschlag: Lichtreflektion

www.tonagerie.at

#keramik #clayart #unikate #handmade #töpfern #steinzeugkeramik #pottery #vase #pots #clay #art #ceramic #homedecor #stoneware #handmadepottery #potterystudio #handmadeceramics #wheelthrown #design #contemporaryceramics #interiordesign #tableware #craft

Schmale, mittelgroße Vase. Glasurfarbe: taupe

Diese Vase mit Blumenstrauß (3 weiße Rosen, 2 weiße Gerbera, 2 orange Blüten und Blätter)

Dr. Armstrong and his team at OMF’s Melbourne ME/CFS Collaboration are investigating the 🔗 btwn neuroinflammation, cerebral blood flow, and dysregulated hormones in #MECFS, #POTS, and #LongCOVID.

https://www.omf.ngo/update-mri-and-pet-imaging/

Heute gibt es zwei Trinkbecher. Schließlich soll man bei diesen Temperaturen ja viel Flüssigkeit zu sich nehmen. Es muss ja nicht unbedingt Wein sein.

www.tonagerie.at

Weinbecher in blau-Grün Tönen mit Gravur und geschwungenem Stiel

My feet and calves are too swollen for compression socks. I didn't put them on earlier because it's hot out and now I'm paying the price. Boo. #POTS

My apartment is 35° C right now (95° F). Too sick to leave but fear I'll get sicker if I stay.

#HeatIntolerance #PrecariousHousing #POTS #pwME #ChronicIllness #ChronicPain #ChronicFatigue #Summer2025

2/
"Sign Up for INIM’s Nutrition Series"
https://forms.gle/yHHfg6bjFLmus8ew6

People can take part either online or in person (in Davie, FL)

Launches Friday, June 27

#MEcfs #LongCovid #POTS #MCAS @mecfs @longcovid @pots @mcas #MEcfs #LongCovid #POTS #MCAS

Neuroimmune Nutrition Series:
Education + Recipes
THEMES
Sodium Support: When You Need More Salt
• Focus: POTS, adrenal dysfunction, hyponatremia
Power Up with Potassium & Magnesium
HOSTED BY:
Irina Rozenfeld, DNP, MSHS, MBA, MSN, APRN, ANP-BC
Annie Lin, D.C.N., CNS, LDN, IFMCP
Violetta E. Renesca, DNP, MBA, APRN, ANP-C, IFMCP
LOCATION:
Center for Collaborative Research Room 245
7595 SW 33rd Street
• Focus: Nerve conduction. muscle relaxation, mitochondrial Davie, FL 33314 function
Low-Histamine Diet Demystified
• Focus: MCAS, migraines, skin flares
Fiber First: Healing the Gut-Brain Axis
• Focus: SCFAs, microbiome diversity, motility
Gentle Detox: Supporting Natural Pathways
• Focus: Liver phase I/II, lymphatics, glutathione support Low-Glycemic Made Delicious
• Focus: Blood sugar balance, neuroinflammation
The Anti-Inflammatory Plate
• Focus: Polyphenols. omega-3s, antioxidants
*Zoom option available if needed. Email mcarr1@nova.edu
START DATE:
June 27, 2025 | 4:00-5:00 PM EST
Flavors that Heal: The Low-Oxalate Approach
• Focus: Kidney health, pain syndromes, bioavailability
Low Glutamate and Feel Great
• Focus: Excitotoxicity, seizures, ADHD
EXPERIENCE thermomix
Low-Purine Pleasures: Recipes for Relief
• Focus: Uric acid, joint inflammation, mood swings
Dessert Without Guilt: Nourishing Treats
• Focus: Blood sugar, cravings, emotional eating

"Sign Up for INIM’s Nutrition Series"
https://forms.gle/yHHfg6bjFLmus8ew6

People can take part either online or in person (in Davie, FL)

Launches Friday, June 27

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #POTS @pots @mcas
1/

Neuroimmune Nutrition Series
Evidence-based nutrition strategies and practical approaches for patients diagnosed with ME/CFS, long-COVID, POTS, MCAS, and related conditions. Simple recipes to implement these principles in your daily life.

Hosted By:

Irina Rozenfeld, DNP, MSHS, MBA, MSN, APRN, ANP-BC
Annie Lin, D.C.N., CNS, LDN, IFMCP
Violetta E. Renesca, DNP, MBA, APRN, ANP-C, IFMCP
Switch accounts

Not shared

Series Format (11 Sessions)
20 Minutes: Education
30 Minutes: Cooking Experience
10 Minutes: Discussion, substitutions, sampling
Handout: QR code or printable 1-page document with recipe, food science facts, food prep tips etc.

Fedi-friends with POTS and who spend any amount of time working from an office chair:

What supports do you use to help you with ergonomics (of working in an office chair)?

E.g. if you use a foot rest, which type do you prefer? (Please share photos if you have any!) Any other ergonomic supports help you with uprightness?

Specifically asking about working from an office chair at a desk, not elsewhere. I already have a good office chair, but it could be upgraded, e.g. with foot rest, leg rest. Already have supports for working elsewhere, too.
#POTS @pots #mecfs #pwME #OrthostaticIntolerance #PosturalOrthostaticTachycardiaSyndrome

Vielseitig verwendbares Keramikgefäß (Nüsse, Blumen, duftende Trockenblumen, …) mit spezieller Glasurtecknik

www.tonagerie.at

#keramik #clayart #unikate #handmade #töpfern# #vase #pots #pottery #clay #art #ceramic #homedecor #handmadepottery #potterystudio #handmadeceramics #wheelthrown #design #contemporaryceramics #interiordesign #tableware #craft

Schwarzes Tongefäß, teilweise mit brauner Glasur

'Holz (Alles aus)' #FotoVorschlag
Keramik kombiniert mit Schwemmholz aus dem Bodensee

www.tonagerie.at

#keramik #clayart #unikate #handmade #töpfern #pottery #vase #pots #clay #art #ceramic #homedecor #stoneware #handmadepottery #potterystudio #handmadeceramics #design #contemporaryceramics #interiordesign #sculpture #craft

Braune und schwarze Keramikteile zu einer Säule aufgebaut. Dazwischen Holzstücke.

Liebe #DGUV, bei aller Liebe, das ist Nonsense und entspricht nicht dem Stand der Wissenschaft! Ihr diskreditiert euch selbst - aber werdet dabei wahrscheinlich noch bejubelt. #POTS #SFN #PostCovid

RE: https://bsky.app/profile/did:plc:2aylwwoxvcrohglyve4hzlaz/post/3ls4sgdzepc2q